365 days to share… my reflections from a second chance.

Living cancer free?

May 24, 2016

I will always remember that feeling of relief when my oncologist announced that my tests came back with “No Evidence of Disease”. Ahhh… dancing with NED I was. Whisked across the parquet, held so gracefully by NED, dancing so eloquently, weightlessly gliding through the air. I was euphoric. My heart was light, my outlook positive, and the relief… was overwhelming. The relief was like the feeling you get when stepping into a warm bath. Where the release of each body part, practically every cell, is palpable. The tension of a full year dissipating into the bathwater. Oh, how I wish time stood still and I lived in that lightness forever. Why must time march on and bring with it “preventative tests”, appointments, weird aches or new pains? And why must the first question that character in my head (I will refer to her as SHE) ask be, “Is the cancer back?”.

Over the years, this conversation, like a recording, has played in my head hundreds, if not thousands, of times. It weaves a tangled mess and knits for hours, sometimes days. A similar pattern forming. Just press play.

SHE – “Whoa, do you feel that {click in the right hip}? What could that be from? Is the cancer back?”

SHE – “Hmmm. That’s weird you have done that pose a thousand times. I know you don’t like the pose but you have never had that painful clicking after. The origin of the cancer was never found… maybe it had started in your {right hip} and they never found it?”

Rational Me– “Ok, now you are going all cray cray on me. I have had so many X-ray’s, MRI’s, PET Scans that included my {right hip}. There is no way a tumor sitting there would have been missed.”

SHE– “You are probably right. But it has never happened before, and …”

Planted.

Yes, this seed of doubt, now officially planted in my psyche, would be watered, nourished and cultivated. The rational me would try to ignore SHE as the chatter in my head continued breathing new life into a plant that just moments ago did not exist. The rational me would try to stand positive and remain in control as SHE prodded “Goooo to the internet…. Goooooo.” Her intent to rouse full fledged fear in my very being. SHE’s pure force would make my fingers type “V U L V A R C A N C E R H I P P A I N” into the Google Search bar.

Panic.

Oh, the options to choose from in the plethora of given Google results- where should I begin?

SHE – “I told you that it was cancer. Now two weeks have passed. You have lost precious time.”

Rational Me– (Who, by the way, is no longer rational.) “I need to call Andrew. Why did I let myself be so happy and ignore these signs? I should not have {had that glass of wine}.”

SHE – “You don’t take care of yourself. You didn’t {exercise yesterday}. It is your own fault.”

Bullet Dodged.

I call Dr. A’s office. (I can almost imagine the page going something like “Anxious patient, {2.5 months} cancer-free, freaking out on line one.”) He calls me back. He listens patiently to my self diagnosed neurosis. His response, like a warm rain, showered me gently with calmness. “I wish you called sooner so you didn’t worry for so long. A {click in your hip} would not be caused by a tumor. Is it still happening? (No.) Perhaps you moved funny (Pigeon pose. In yoga class. Two weeks ago.). This is normal – to stress about every bruise or pain. With time it will get better. You are doing great. The worst is behind you.”

For years I begged him to provide a 1-800 number where I could press 1 to hear a recording of him saying “Hello Kathy. You are fine. Everything is just fine.”

Peace.

For now. Well at least until the routine CT scan that was scheduled for two weeks later… when the conversation between SHE and the Rational Me would rise again. Press play.

Over the course of my 13 years being “cancer free”, I had CT scans every 3 months for the first year and then every 6 months for the next 5. In recent years the scans have been more sporadic, but since I still have lichen sclerosis, which is thought to be the cause of my cancer, I continue to see my oncologist and a vulvar dermatologist every six months or more often as needed. These appointments sometimes end with unexpected CT Scans or biopsies. The minutes, hours and days before these appointments and the minutes, hours and days after hang loosely around me. I feel suspended, like a witness watching my life spin. Subliminally anticipating the visit with the doctor or waiting for the results of scans or biopsies, my head riddled with conversations between the Rational Me and SHE. My outward façade desperately operating as if the world is not tilted slightly off its axis.

Are we, any of us, really ever cancer free?

Merriam defines cancer as:

1 capitalized a: a northern zodiacal constellation between Gemini and Leo b (1) : the fourth sign of the zodiac in astrology, (2) : one born under the sign of Cancer

2 [Latin, crab, cancer] a: a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b: an abnormal bodily state marked by such tumors

4 a: an enlarged tumor like plant growth (as that of crown gall) b: a plant disease marked by such growths

Let us focus on the second and third definitions. First number 2.

2 [Latin, crab, cancer] a: a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b: an abnormal bodily state marked by such tumors .

To my fellow comrades who have fought the fight. Bearing scars of chemotherapy, radiation and surgery which has altered your physical body forever. I understand that your mental state has been forever altered as well. I know the tenacity involved in maintaining the state of bliss you experienced during your first dance with NED. You are not alone in your pursuit of NED. The dance floor is full. Some couples flit about like Fred Astaire and Ginger Rogers, others like Elaine from Steinfeld. Our ability to dance freely relies on our ability to keep SHE away from the ballroom during every follow-up, scan and biopsy as well as every pain, lump or bruise of daily living. Our ability to dance freely relies on living the new habits we created since our cancer. Eating healthy. Exercising. Having strong reasons for living. Connecting with others. Letting go of the outcome.

Now let us look at the third definition of cancer.

3 : something evil or malignant that spreads destructively

Isn’t “Health Care” an oxymoron? The state of being free from illness and injury is often mined with the search for something evil or malignant. Think of mammograms, colonoscopies, CT scans, MRI’s. This is “preventative medicine”. Pharmaceutical companies, our health care system and the media have planted panic deep in our brains. We must have preventative tests or we can die. Search for dis-ease. The very act of going through the tests and waiting days for results bring a cacophony of fear. Every minute we live in that state of panic and fear damages us in little plinking ways. We loose sleep. We have a few drinks to calm us. We don’t eat. SHE starts to knit frantically, creating a pattern of what ifs.

We have become a society looking for illness. In the name of saving our lives, we are being taught to stop living. The subliminal messaging constantly at work, feeding SHE, flaming her energy.

Over the years I have found ways to quiet the chatter. I have formed new habits. I understand this is why I am so drawn to mindfulness and have such an obsession with living in the moment. Many of you have been to my home or cabin where there are signs everywhere – “Keep Calm and Carry On”; “If you are lucky enough to be at the lake, you are lucky enough.”; “I love us.”; “Peace”; “Breathe”. These signs are not decorations. These signs are necessary reminders for me to let go of SHE and live in this very moment. Visual cues I cannot live without. I continue to do research on the connection our life experiences – be they passion, hunger, love, pain, or fear – have on our physical body – our heartbeat, digestive track, and brain waves. I do this to keep at the forefront of my life that with every action I ignite a reaction. I am constantly challenging myself to understand the methods of my madness. I try so desperately to practice what I preach. But I fail. And I begin again. (This seems to be a recurring theme in my blog… hmmm.) Admittedly, I am less apt to enter the dreaded world of Google and with years of practice I can pretty quickly cauterize fear and panic when SHE surfaces. But it does take effort. In fact, it takes enormous effort when I am tired, not eating well, imbibing, or lacking in my yoga, mindfulness practice. During those periods SHE can take over the Rational Me quickly and efficiently wreak havoc in my every cell. Affecting every heartbeat until I am either invited back to the dance floor with NED (confirmed by a preventative test or biopsy) or able to stand behind the madness on my own, allowing my shoulders to relax and my heart to open to the moment, with no formal health care system involved.

Imagine a “fitbit” that gathered not only data about our sleep cycles, and exercise habits, but also collected information on every morsel of food and drink we consumed, the quality of the air that we breathed AND our stress level based on the eminence of our heartbeat and the recordings of the SHE chatter. What if the job of our primary care was not to save our lives and search for illness but instead, assist us in achieving the essence of life. What if the conversations with our doctors came from a place of understanding that they too have cancer cells swimming among their healthy cells. Instead of offering patches, pills, and tests searching for those misbehaving molecules, they assessed our lifestyle “fitbit”, held our feet to the fire and prescribed habitual changes. Sent us to mindfulness or nutrition classes….

Much of our lives trajectory lies in our own power to change. I mentioned the book Radical Remission in my post I’m Gonna Love You. Dr. Turner has dedicated her life to understanding the factors that have proven to reverse a cancer diagnosis. Her nine factors are within reach of each and every one of us. Attainable without a prescription or pill or test. Together these factors empower us to take control of our body, mind and spirit. I know, I know. To live an anti-cancer way of life is incredibly difficult. It would be easy if you were a Monk, on an island. Willpower. Perseverance. Grit. All necessary to avoid the titillating forces forever present in our world. I understand some of you reading this may have been dealt genetic cards that all the habits in the world will not reverse. My intention is certainly not to demean your circumstances. I only offer you a thread of control.

It is true, every single human being on the planet has cancer cells in their body. So no, there is no such thing as cancer free. The beauty of life is that our body is equipped with natural defenses. We come armed, each of us with the forces to prevent individual defective cells from joining together and causing chaos. I challenge you to ignite your own power.